Autism Strategy
(2013 – 2020)
Action Plan
(2013 – 2015)
A Draft Document for Consultation
December 2012
List of Contents
Foreword by the Minister......................................................................................... 4
Minister for Health, Social Services and Public Safety ......................................... 5
Executive Summary ................................................................................................. 6
1.0
1.1
1.2
1.3
1.4
1.5
1.6
1.7
1.8
Introduction ................................................................................................. 8
Context ......................................................................................................... 8
Scope............................................................................................................ 9
Research and Prevalence............................................................................. 9
Vision and Values ....................................................................................... 10
Aim.............................................................................................................. 11
Objectives ................................................................................................... 11
Pre-consultation to Inform Development of the Autism Strategy................. 11
Equality Considerations .............................................................................. 12
2.0
2.1
2.2
2.3
Existing Service Provision ....................................................................... 14
Background and Legislative Context .......................................................... 14
Children’s Services Planning ...................................................................... 15
Transitions Sub-group................................................................................. 15
2.4
2.4.1
2.4.2
2.4.3
2.4.4
Health and Social Care ............................................................................. 16
Understanding the Needs of Children in NI (UNOCINI) .............................. 16
Regional Autism Spectrum Disorder Network (RASDN .............................. 16
Children’s Services - Six Steps of Autism Care .......................................... 17
Adult Services - Adult Autism Care Pathway .............................................. 18
2.5
2.5.1
2.5.2
2.5.3
Education .................................................................................................. 19
Inter-board Autism Group ........................................................................... 19
Middletown Centre for Autism ..................................................................... 20
The SEN and Inclusion Review .................................................................. 21
2.6
2.6.1
2.6.2
2.6.3
2.6.4
2.6.5
Employment and Learning ....................................................................... 21
Employment Support .................................................................................. 22
Advice and Guidance .................................................................................. 22
Further Education (FE) ............................................................................... 22
Higher Education (HE) ................................................................................ 22
Professional and Technical Training - Training for Success (TfS) and
ApprenticeshipNI ........................................................................................ 23
2.7
2.7.1
2.7.2
2.7.3
2.7.4
2.7.5
Social Development .................................................................................. 23
Housing....................................................................................................... 23
Social Security Benefits .............................................................................. 24
Staff Awareness .......................................................................................... 24
Staff Training .............................................................................................. 25
Communication ........................................................................................... 25
2.8
Justice ....................................................................................................... 26
2.9
Driving and Driving Tests ........................................................................ 26
3.0
3.1
3.2
3.3
3.4
3.5
3.6
3.7
3.8
3.9
Strategic Priorities .................................................................................... 27
Awareness .................................................................................................. 27
Accessibility ................................................................................................ 29
Children, Young People and Family ........................................................... 30
Independence / Choice and Control ........................................................... 32
Transitions .................................................................................................. 32
Employment and Employability ................................................................... 33
Accessing Justice ....................................................................................... 34
Being Part of the Community ...................................................................... 35
Participation and Active Citizenship ............................................................ 36
4.0
4.1
4.2
4.3
4.4
4.5
4.6
Action Plan ................................................................................................ 38
Implementing the Action Plan ..................................................................... 39
Autism Strategy Implementation Group ...................................................... 40
Duration of the Implementation Group and Terms of Reference ................ 41
Monitoring and Reporting............................................................................ 41
Finance and Future Investment .................................................................. 41
Structure of the Action Plan ........................................................................ 42
5.0
Action Plan (2013 – 2015) ‘Laying the Foundations’.............................. 42
Appendices
1
2
3
4
List of Abbreviations
Autism Strategy Project Board
Summary Equality Screening Assessment
References
Alternative Formats
This document is available, on request, in alternative formats - Braille, audio, large
print, or as a PDF document. The Department will consider requests to produce this
document in other languages. If you require the document in these or other formats
please contact the DHSSPS Autism Strategy Team:
Phone:
Fax:
Email:
Post:
028 90 522153
028 90 522500
[email protected];
Room D1, Castle Buildings
Stormont, Belfast BT4 3SQ
3
Foreword by the Minister
In December 2011, my Department initiated a consultation to support and
facilitate the development of a draft Autism Strategy and Action Plan. This was
the key requirement of the Autism Act (Northern Ireland) 2011. This Strategy and
Action Plan is the result of that work and I have great pleasure in launching it for
public consultation.
This Strategy is forging new ground as the first cross departmental strategy of its
kind, addressing the needs of people with autism throughout their lives and their
families and carers. I want to commend my NI Executive Ministerial colleagues
and their departmental officials who worked together to help develop the Strategy
and Action Plan.
Historically, within health and social care, funding to meet the assessed needs of
people with autism has been provided for from within the Learning Disability
programme of care. Since 2009 my Department has invested an additional
£1.64m each year directly on services for people with autism to support the
actions outlined in the ASD Action Plan. If we add to this, the expenditure of
other departments such as the Department of Education, we have a picture of
the growth and considerable investment in services for people with autism over
recent years.
Even though the initial two-year Action Plan attached to the Strategy realistically
assumes that there may be limited additional investment, this does not mean that
progress on laying the foundations for the future cannot be achieved. Through
more innovative and efficient use of the considerable existing resources invested
in this area, I and my NI Executive colleagues believe much can be done. As part
of this, the importance of cross-departmental working is acknowledged and will
be increasingly significant as future editions of the Action Plan are developed.
4
Collectively the NI government departments have tried hard in this Strategy and
Action Plan to address the key issues identified by those who took part in the
pre-consultation exercise. I would now urge you to consider the document and
the proposed actions and let us have your views as soon as possible.
EDWIN POOTS MLA
Minister for Health, Social Services and Public Safety
5
Executive Summary
This Strategy (2013 – 2020) and Action Plan (2013 – 2015) confirms the NI
Executive’s commitment to improving services and support for people with
autism in Northern Ireland (NI).
It has been developed in accordance with the articles stated in the United
Nations Convention on the Rights of Persons with Disabilities and therefore
supports the values of dignity, respect, independence, choice, equality and antidiscrimination for people with autism. The Strategy recognises the need for a
‘whole life’ approach to the provision of services and support. It will require cross
departmental working, in partnership with the community and voluntary sector, to
continually review the future development of the Strategy and Action Plan.
The more detailed sections of the Strategy are presented in the four sections
which follow this executive summary with an Action Plan attached.
Section 1 - Introduction – sets out the vision, values and objectives of the
Strategy. It provides a high level summary of the strategic context and introduces
the equality considerations relevant to the policy.
Section 2 – Existing Service Provision – outlines at a high level the range of
services and support currently available to people with autism across a range of
NI Government Departments.
Section 3 – Strategic Priorities – sets out the key themes and defines the
strategic priorities for the future development and delivery of services for people
with autism.
Section 4 - Action Plan – describes the implementation structures and
monitoring and reporting arrangements to ensure the delivery of the initial twoyear Action Plan.
The Action Plan – sets out the key actions proposed, who is responsible for
implementation and the outcomes expected for those with autism, their families
and carers. The Action Plan is presented in nine sections as follows:
6
1. Awareness;
2. Accessibility;
3. Children, Young People and Family;
4. Independence, Choice and Control;
5. Transitions;
6. Employment and Employability;
7. Accessing Justice;
8. Being Part of the Community; and
9. Participation and Active Citizenship.
7
1.0
Introduction
Autism is a lifelong disability which affects the way an individual relates to
people, situations and their immediate environment.
The term Autism
Spectrum Disorder (ASD) is often used because the impact of autism varies
from person to person.
This Strategy and Action Plan have been developed to help improve access to
services and support for people with autism, their families and carers, throughout
their lives.
It has been developed through a process of collaborative and consultative
working between people with autism, their families and carers, representatives
from all NI government departments and some key community and voluntary
sector organisations. Representatives from all of these sectors form the
membership of the Project Board established to manage and direct the
development of the Strategy and Action Plan. Appendix 2 shows the organisation
and membership of the Project Board.
1.1 Context
The Autism Act (NI) 2011, which received Royal Assent on 9 May 2011, came
into operation on 9 August 2011. The Act had two main effects:
1. To amend Schedule 1 to the Disability Discrimination Act 1995 (DDA
1995) by extending the criteria which must be considered when deciding
whether or not a physical or mental impairment is to be taken as affecting
the ability of a person to carry out normal day to day activities by adding
the following criteria to the existing list;
i.
Taking part in normal social interaction; or,
ii. Forming social relationships.
These additional criteria will impact upon whether a person then falls
within the definition of a disabled person in the DDA 1995; and
2. To require the DHSSPS to lead on the development and implementation
of a cross-departmental strategy.
8
1.2 Scope
The Act prescribes that the Strategy must:

Set out how the needs of people with autism are to be addressed
throughout their lives including (but not limited to) their educational, health
and social needs.

Set out how the needs of families and carers of people with autism are to
be addressed; and

Contain proposals for promoting an autism awareness campaign.
The Act also gives the DHSSPS power to make regulations in respect of the
Autism Strategy
For the purposes of this Strategy the term “autism” means Autism, Asperger
syndrome, Rett’s syndrome or any pervasive developmental disorder not
otherwise specified, as outlined in the Autism Act (NI) 2011.
1.3
Research and Prevalence
The Act requires HSC Trusts to provide data on the prevalence of autism in order
that the Strategy can be published and updated and NI departments can
effectively implement the Strategy.
A sub group has been established to explore existing data sources, within the
health and social care and education sectors. The group will also help HSC
Trusts to determine and put in place any additional arrangements to capture data
on the prevalence of autism in the child and adult population in their areas.
The main sources of data identified as currently available, include information
collected by the Department of Education (DE) and data in relation to autism
among the adult population recently published by the National Institute for
Clinical Excellence (NICE). This indicates a prevalence rate of 1.1% equating to
approximately 5,000 children and 15,000 adults currently being affected by
autism in NI. As the new arrangements are embedded in HSC Trusts it is
anticipated that accurate prevalence data specific to NI will be available in the
future to help inform development of services.
9
An Autism Advisory Research Committee is established for this Strategy. This
Committee will bring together a range of stakeholders to initiate research to help
inform the development of this Strategy and in the continuing and longer term will
serve to:

Develop an internationally linked autism research agenda to enhance
autism research for NI; and

Publish research information to inform the development and provision of
autism services in NI.
1.4
Vision and Values
Our vision for this Autism Strategy and Action Plan aligns with the overarching
principles in the United Nations Convention on the Rights of Persons with
Disabilities (UNCRPD): dignity; non-discrimination; participation and inclusion;
respect for difference; equality of opportunity; accessibility; equality between men
and women; and respect for children. We therefore envisage that people with
autism will contribute to and benefit from the cultural, social, political and
economic life of NI on an equal basis with others.
Our values underpinning this vision are:

Dignity: people should be given the care and support they need in a way
which promotes their independence and emotional well-being and
respects their dignity;

Privacy: people should be supported to have choice and control over their
lives so that they are able to have the same chosen level of privacy as
others;

Choice: care and support should be personalised and based on the
identified needs and wishes of the individual;

Safety: people should be supported to feel safe and secure without being
over-protected;

Realising potential: people should have the opportunity to achieve all
they can; and
10

Equality and diversity: people should have equal access to information,
assessment and services and all service providers should work to redress
inequalities and challenge and eliminate discrimination.
1.5
Aim
This Strategy aims to ensure that the services commissioned and provided by
government departments in NI for people with autism, their families and carers
will have developed in such a way that they:

Promote awareness and better understanding of the challenges faced
by people with autism;

Support people with autism, their families and carers to become well
informed about accessing the services they need;
 Encourage social inclusion of people with autism and work to address
discrimination/stigmatisation; and
 Are tailored to meet the changing needs of people with autism over the
course of their lifetime.
1.6
Objectives
The objectives of the Strategy are to:
 Support people with autism to better exercise their rights, choices and
life opportunities;
 Support the continuing development of an inclusive and effective range
of high quality services for people with autism, their families and carers;
 Develop a more integrated approach to the planning, commissioning
and
management
of
services
within
and
across
government
departments and the independent, community and voluntary sectors;
 Develop clear and achievable recommendations and actions which are
capable of being monitored and evaluated; and
 Ensure that an appropriate, sustainable and affordable implementation
infrastructure is put in place following the publication of the Strategy
and Action Plan.
1.7
Pre-consultation to Inform Development of the Autism Strategy
11
A comprehensive scoping and pre-consultation exercise was conducted to help
inform the remit, themes and strategic priorities for this Strategy and Action Plan.
This involved a series of engagement events across Northern Ireland to take the
views of people with autism, their families and carers regarding the key issues
they wish to see taken forward in the Strategy and Action Plan. Children and
young people with autism attended two further engagement events, hosted in
Belfast and Omagh. The engagement events were facilitated by some autism
voluntary sector organisations with active participation from all government
departments and relevant agencies.
In addition to the engagement events, the DHSSPS developed an online
questionnaire which was specifically targeted at a wider range of people with
autism who were unable to, or did not want to attend and / or participate in the
engagement events.
The information and feedback from both the engagement events and the
responses to the questionnaires has played a key part in helping to inform the
structure and content of the draft Strategy and Action Plan to be issued for formal
public consultation.
1.8
Equality Considerations
Section 75 of the NI Act 1998 requires all public bodies in carrying out their
functions relating to NI to have due regard to the need to promote equality of
opportunity between:
 Persons of different religious belief, political opinion, racial group, age,
marital status or sexual orientation;
 Men and women generally;
 Persons with a disability and persons without; and
 Persons with dependants and persons without.
In addition, without prejudice to the above, public bodies must also in carrying out
their functions relating to NI have regard to the desirability to promote good
12
relations between persons of a different religious belief, political opinion or racial
group.
13
2.0
Existing Service Provision
2.1
Background and Legislative Context
The United Nations Convention on the Rights of Persons with Disabilities
(UNCRPD) (2008) is the first such treaty of the twenty-first century. The
Convention does not create new rights for disabled people; rather it helps
member countries to have a better understanding of disabled people’s human
rights. Signatory countries are obliged to “promote, protect and ensure full and
equal enjoyment of all human rights and fundamental freedoms by all persons
with disabilities and to promote respect for their inherent dignity”.
The Disability Discrimination Act (1995) was a landmark piece of legislation
and the first anti-discrimination legislation which specifically focussed on disabled
people. It effectively enshrined, in law, disabled people’s rights to participate in
civil society by placing duties on employers, service providers, landlords, schools
and colleges. Part III of the Special Educational Needs and Disability (NI) Order
2005 focuses specifically on disability discrimination in education.
The Autism Act (NI) 2011 amends Schedule 1 to the DDA 1995 by extending
the criteria which must be considered when deciding whether or not a physical or
mental impairment is to be taken as affecting the ability of a person to carry out
normal day to day activities by adding the following criteria to the existing list:
i.
ii.
Taking part in normal social interaction; or
Forming social relationships.
The Disability Discrimination Act 1995 was further strengthened by the Disability
Discrimination (NI) Order 2006 and required public authorities, when carrying
out their statutory functions, to have due regard to the need to:

Promote positive attitudes towards disabled people; and

Encourage the participation of disabled people in public life.
The Children (NI) Order 1995 is the primary piece of legislation in respect of
children in NI. Article 17 states that a child shall be taken to be in need if “he is
disabled.” Article 18 determines the statutory responsibilities of HSC Trusts to
provide for ‘children in need’ in their area, including disabled children. In addition,
14
Article 19 provides for support for ‘children in need’ within early years, which also
includes children with disabilities. The Order requires HSC Trusts to take account
of the child’s individual circumstances and to engage with parents when
assessing needs of children with disabilities.
Children’s Services Planning
2.2
Schedule 2 of the Children (NI) Order 1995 places a statutory responsibility on
the HSC Board to review services for ‘children in need’ and their families and
publish an annual children’s services plan in consultation with a range of
agencies. This responsibility is delivered through the Children and Young
People’s Strategic Partnership (CYPSP).
The overall purpose of the CYPSP is to lead integrated planning and
commissioning of supports and services aimed at improving outcomes for
children and young people across the province. The CYPSP includes a number
of regional sub-groups which aim to improve outcomes for specific groups of
children and young people at a particular disadvantage, and their families, across
NI. The CYPSP regional sub-groups which are relevant in the context of this
Strategy and Action Plan are:

Children and young people with disabilities;

Transitions;

Children and young people with emotional and behavioural
difficulties;
2.3

Young carers: and

Children, young people offending.
Transitions Sub-group
The CYPSP sub-group on Transitions referred to above is chaired by the Health
and Social Care Board and includes representatives from key Departments and
agencies. The sub group is proposing the development of a ‘Transition
Framework’ to be jointly developed by the health and social care, education,
employment and voluntary sectors. The outcome of any plans developed will be
implemented through established Locality Groups.
15
2.4
Health and Social Care
From a health and social care perspective there are a number of frameworks and
care pathways which underpin and build on the legislative and statutory
obligations, requirements and strategic policy commitments in relation to children
and young people. They include the Understanding the Needs of Children in
Northern Ireland (UNOCINI) framework and more specifically related to this
Strategy and Action Plan, the Six Steps of Autism Care and the Adult Autism
Care Pathway, which were both developed by the Regional Autism Spectrum
Disorder Network (RASDN).
2.4.1
Understanding the Needs of Children in NI (UNOCINI)
The Understanding the Needs of Children in Northern Ireland (UNOCINI) model
of assessment and service planning provides the key pathways within the
UNOCINI framework. These are cross-disciplinary and cross-agency and are
centred upon the needs of the individual child.
The UNOCINI framework has been agreed as the primary service pathway for
children’s services within the HSC and for key agencies involved with children
and young people. UNOCINI has applicability to all situations where ‘children in
need’ assessments are required and where the outcome of such assessment of
needs requires services to be provided. The framework, which is needs-led,
includes a ‘child in need’ pathway which can accommodate children and young
people with a disability. It also incorporates a provision to include a carer’s
assessment, for carers of children with disabilities, including those with autism.
The UNOCINI framework also allows for the undertaking of specialist
assessment in cases where, for example, there may be complex physical
healthcare needs and where a more in-depth and specifically focused
assessment is required given the needs of the child and their carers.
2.4.2
Regional Autism Spectrum Disorder Network (RASDN)
Following the Independent Review of Autism Services (2008), the DHSSPS
developed an ASD Strategic Action Plan 2008/09 – 2010/11. RASDN, a multi16
agency, multi-disciplinary group, was launched in June 2009 to take these
actions forward within HSC Trusts. ASD Reference Groups were also
established
in each HSC
Trusts,
highlighting the
views
of
voluntary
organisations, parents, carers and service users’ to help shape the future of
autism services across NI.
The considerable and significant progress in autism-specific children’s services in
NI can be attributed to RASDN. Their main achievements include:

The development of specialist children’s autism services in each HSCT
developed - comprising diagnostic / assessment, early intervention and
family support services;

Waiting times for diagnosis and / or initial assessment of children have
improved significantly;1

Regional ASD Co-ordinator post established and filled; and

Establishment of an ASD Coordinator and cross directorate operational
group in each HSCT.
These local trust autism groups are working to address issues across the wider
age range from children and adolescents into adulthood, overseeing the
implementation of the RASDN Action Plan across teams and services. The
groups also include representatives from a range of agencies and sectors.
2.4.3
Children’s Services - Six Steps of Autism Care
The Six Steps of Autism Care and Autism: A Guide for Families were prepared in
partnership with the Regional ASD Reference Group. They aim to standardise
the process of diagnosis, assessment and subsequent provision of support
among practitioners and across the five HSC Trusts.
They will also help to
ensure closer liaison/partnership with education services. A Care Pathway is
being implemented within a regional process to ensure front line practice within
Trusts is provided in accordance with this regionally agreed consensus
document.
1
RASDN Trust Performance Report 1st October to 31st December 2010, HSCB
17
A regional protocol for an interface between autism services and specialist Child
and Adolescent Mental Health Services (CAMHS) has been developed as part of
the Six Steps of Autism Care model. The protocol sets out the arrangements for
joint working between autism services and specialist CAMHS where a child or
young person has a co-occurring mental health need or where these concerns
exist. This protocol is currently being implemented by all HSC Trusts.
2.4.4 Adult Services - Adult Autism Care Pathway
Less progress has been made towards developing older adolescent/adult autism
services. Taking a longer term view, however, the considerable investment in
children’s services should lead to future dividends given that more robust
provision during the early years of development is known to ameliorate the more
severe impact of disability in later years. It is evident that the development of
services for older adolescent/adults should continue to be a ‘main’ regional
priority.
In June 2012, the journey to redress this imbalance began with the launch of the
Autism Adult Care Pathway. This provides guidance to professionals, adults
and families on autism. It aims to cover the identification and diagnosis of autism,
ongoing assessment and access to interventions and services for adults of all
ages with autism. This guidance is intended for use by service users, parents,
carers, health care professionals, primary care practitioners, education
professionals, careers advisers, social security officers, voluntary organisations,
employers and any others who offer guidance to, or are working with adults with
autism.
Traditionally, in health and social care, funding to meet the needs of people with
autism has been included within the Learning Disability programme funding. It is
not, therefore, possible to identify specific expenditure on autism services.
However, additional funding of some £1.54m was allocated in 2009/10 towards
supporting implementation of the ASD Action Plan, published in September
2009. In 2010 a further £100k was made available to develop specialist adult
autism diagnostic services. This has resulted in £1.64m being available
recurrently from April 2011.
18
2.5
Education
Education provision for children and young people with autism is made under the
special educational needs legislative framework and the statutory Code of
Practice (and Supplement) on the Identification and Assessment of Special
Educational Needs (SEN). Support is provided according to the learning needs of
the individual child or young person and does not depend on the completion of a
formal medical diagnosis. The publication of the Report of the Task Group on
Autism in 2002 provided an agenda for a ten year period covering improvements
in:

Multi-agency and multi-disciplinary assessment services;

Training for parents of children with autism, schools and relevant
Education and Library Board (ELB) personnel;

Common frameworks across ELBs for assessment and provision; and

School-based and home-based educational provision.
The Department of Education (DE) provides core funding annually to the ELBs
for all SEN, including autism.
To meet the challenges of the improvement
agenda set by the 2002 Autism report, DE has, since the 2003/04 financial year,
provided additional resources of some £17m, over and above the core funding
for all SEN, to support various positive measures specific to autism, including:

Autism related training within the pre-school sector;

The publication of “Autistic Spectrum Disorders – A Guide to Classroom
Practice” for teachers in all schools;

The production of a range of school/parent resources to support positive
interventions for children with autism some of which have been produced
on a north south basis;

A self evaluation guide for schools; and

The Middletown Centre for Autism.
2.5.1
Inter-board Autism Group
In 2003/04 the Inter-board Autism Group was formed to promote consistency in
relation to the identification, assessment and delivery of services to children with
autism across the five ELBs. This led to the establishment in each ELB of an
19
autism advisory team comprising a specialist senior educational psychologist and
advisory teachers.
During 2010 the education provision for children and young people with autism
was reviewed to identify gaps in provision. This identified, among other things,
the need for collaboration between DE and DHSSPS and the need for further
collaboration between the ELBs and HSC Trusts to promote uniformity and
cohesion in health and education provision.
In line with DE’s policy of inclusion, the percentage of pupils with autism with a
statement of special educational needs being educated in a mainstream setting
has increased from approximately forty percent in 2002/03 to almost sixty
percent in 2011/12. To enhance the delivery of support to children with autism,
many schools have tailored the classroom environment and educational
programmes to meet the individual strengths and needs of the children. Where
appropriate to their needs, children and young people with autism, also continue
to attend special schools.
The training and guidance material available to support schools is enabling
teachers and management teams to improve their knowledge of autism and to
organise the whole school provision for autism more effectively. As a
consequence the quality of teaching of pupils with autism is improving across all
educational sectors.
In 2011, as part of the work to review the SEN Framework, DE published a SEN
Resource File. This was sent to all schools and contained practical materials to
be used by school staff in supporting pupils with SEN. A specific chapter is
dedicated to providing support to those with autism.
2.5.2
Middletown Centre for Autism
The Middletown Centre for Autism was established in 2007, funded jointly by the
DE and the Department of Education and Skills in the Republic of Ireland (RoI) to
work with children and young people whose needs are more persistent,
challenging and complex and to provide training and research services. Its
services are designed to be complementary to those provided by the education
20
and library boards, broadening the scope of educational support that can be
provided to those children with autism. The Centre is still under development,
but has trained over 6,500 professionals and parents in NI (and similar numbers
in the RoI) as well as providing interventions for children and helping whole
schools develop an autism competent environment. Ministers have recently
announced a further limited expansion of services to enable support to be
provided to more young people with complex autism. The Centre has also
published a series of research papers.
2.5.3
The SEN and Inclusion Review
In July 2012, the Executive agreed to a revised policy for SEN and Inclusion and
to the preparation of a Bill amending the existing legislation to implement that
policy. The revised framework will ensure the child is placed firmly at the centre
of the processes for identification, assessment, provision and review of those
with SEN. The key objectives of the revised policy include early identification,
intervention and assessment, whilst also ensuring that the SEN support needs of
all children and young people (including those with autism) are met.
2.6
Employment and Learning
The Department for Employment and Learning (DEL) is responsible for further
and higher education, training and skills, and employment programmes. DEL and
its key delivery partners – such as colleges, universities and training providers,
provide a range of programmes and services on a pan-disability basis, which
includes people with autism.
These services assist individuals who wish to
obtain and sustain work, move towards employment, or develop new/existing
skills. Many of these incorporate dedicated pan-disability funding streams and
more flexible entry criteria to better address the various barriers which those with
a disability/ learning difficulty may face.
DEL’s service provision for people with disabilities, including autism, can be
broken down into four main areas; Employment Support; Careers Advice and
Guidance; Further and Higher Education; and Professional/Technical Training,
including Apprenticeships. The Department has a range of strategies already in
place which guide the delivery of its services across these key areas.
21
2.6.1
Employment Support
Employment Support covers a range of vocational and pre-vocational
programmes to meet the needs of disabled people, including people with autism.
A range of programmes and services are available including:

Employment assessments carried out by a team of Occupational
Psychologists;

Specialist support to find and keep suitable employment;

Residential training for disabled people who are not ready to access
mainstream training; and

Menu-based employment support to better target individuals’ barriers to
employment via ‘Steps to Work’ and new ‘Work Connect’ programmes.
2.6.2
Advice and Guidance
DEL’s Careers Service provides impartial careers information and an advice and
guidance service to clients of all ages and abilities, including people with autism.
The Careers Service has arrangements in place with ninety-nine percent of postprimary schools to support the schools’ careers education programmes. Through
the partnership agreements the schools’ careers advisers are invited to attend
transition planning meetings at year-ten and subsequent annual reviews until a
young person leaves post-primary education. Careers advisers are all trained to
work with clients with autism.
2.6.3
Further Education (FE)
Under the Special Educational Needs and Disability (NI) Order 2005, further
education colleges make reasonable adjustments to enable students with autism
to access the mainstream curriculum. To help meet the cost of any additional
support required, colleges receive £3.5 million per year from DEL’s Additional
Support Fund (ASF).
2.6.4
Higher Education (HE)
Widening Participation in Higher Education by students from those groups who
are currently under-represented is one of DEL’s key strategic goals. It is for this
reason that DEL led on the development of a Regional Strategy for Widening
22
Participation, called Access To Success, which was published on 11 September
2012. Students with learning difficulties and disabilities have been identified as
one of the target groups in the strategy.
2.6.5
Professional and Technical Training - Training for Success (TfS)
and ApprenticeshipNI
Under DEL’s Training for Success (TfS) programme, there is extended eligibility
up to age twenty-two for those with autism. Participants with autism on these
programmes, who require specialist support, will be given every opportunity to
overcome difficulties and to develop using the most appropriate support
mechanisms.
2.7
Social Development
The Department for Social Development (DSD) has strategic responsibility for
urban regeneration, community and voluntary sector development, social
legislation, housing, social security benefits, pensions and child support. Its three
key strategic priorities are:
-
To provide access to decent, affordable sustainable homes and housing
support services;
-
To meet the needs of the most vulnerable by tackling disadvantage
through a transformed social welfare system;
-
The provision of focused support to the most disadvantaged areas and
encouraging social responsibility; and
-
To bring divided communities together by creating urban centres which
are sustainable, welcoming and accessible to live, work and relax in
peace.
2.7.1 Housing
In terms of providing supported housing services for people with autism, the
DSD’s Supporting People Programme enabled the Northern Ireland Housing
Executive (NIHE) to establish close working arrangements with the DHSSPS and
the Health and Social Care Board and Trusts through the Supporting People
Commissioning Body. Capital and revenue funding is provided to facilitate the
development of supported housing services for people with disabilities, including
23
people with autism, through the Programme. Applications for assistance are
made via Social Housing Allocations and Private Sector Grants.
Applications for social housing from people with autism or from families that
include a family member with autism will be assessed under the Common
Selection Scheme for the allocation of social housing in NI. In the same way
recommendations from the occupational therapy service for adaptations to a
NIHE property to provide for the needs of an occupant with autism will be dealt
with on a case by case basis.
2.7.2
Social Security Benefits
Depending on individual circumstances, a range of social security benefits is
available to people with disabilities including people with autism and their carers,
including:

Disability Living Allowance;

Attendance Allowance;

Employment and Support Allowance;

Carer’s Allowance; and

Income-related benefits, such as Income Support and Pension Credit.
Proposals contained within the Welfare Reform Bill for NI may result in major
changes to the current welfare system which may see new benefits and IT
systems introduced. The Social Security Agency will continue to support people
with disabilities including those with autism and their carers as the new changes
are introduced.
2.7.3
Staff Awareness
In addition to the standard training delivered to all frontline staff, further
awareness sessions, which covered mental health and physical disability, were
provided through Disability Action for staff working in Disability and Carers
Service and Incapacity Division. In 2010, awareness sessions covering autism
were delivered to staff across Disability and Carers Service.
24
2.7.4
Staff Training
Disability Living Allowance decision-makers undergo a comprehensive twelveweek training programme followed by an extensive consolidation period which
includes mentoring by an experienced decision maker. The training package
includes key messages in relation to perceptions about disability and the impact
of disabilities such as autism.
Medical guidance, which is regularly updated, provides detailed and specific
information to help decision makers understand how customers are likely to be
affected by disability. The medical guidance is written by the Department of Work
and Pensions Medical Advisors with input from an autism organisation. Decision
makers are supported in interpreting medical reports and guidance by Medical
Officers, who are trained General Practitioners, located on site.
Training for decision makers is kept under continuous review and additional
training is provided when any changes to legislation or case law impact on the
decision making process.
Awareness training on autism has also been introduced for staff in the
Employment and Support Allowance Centre. The new training, which includes
material on autism provided by an autism organisation, assists call agents in
dealing with individuals with autism. Advocates can assist vulnerable callers in
making a claim to Employment and Support Allowance.
2.7.5
Communication
The Social Security Agency has taken steps to make the claiming process for
Disability Living Allowance as straightforward as it can be to ensure that all
disabled people, including people with autism, are able to access this benefit.
Senior Social Security Agency officials meet regularly with relevant organisations
to continually review and revise the claims process. That approach provides a
gateway for key client groups to influence the design and content of not only the
Disability Living Allowance claim form, but also current processes and new
initiatives.
25
2.8
Justice
The Department of Justice (DOJ) is committed to improving services for all those
who come into contact with the criminal justice system and to ensuring that
additional support is available for those who need it. ’Special measures’ are
available to help vulnerable and intimidated witnesses give evidence in court, if
they wish to use them.
The DOJ plans to bring forward a new five-year strategy for victims and
witnesses by March 2013, and the themes and actions in that strategy will
encompass the specific needs of anyone with a hidden disability such as autism
who comes into contact with the justice system as a victim or witness. The
Department is also considering ways of ensuring that support is available for all
those who come into contact with the criminal justice system.
The DOJ recognises that the types of support required will vary considerably,
and so is committed to ensuring that each individual’s needs are assessed as
early as possible, and that these needs are kept under review as the person
progresses in their journey through the criminal justice process, whether as a
victim or a witness or as an accused person, defendant or offender and that their
needs are responded to consistently and appropriately.
2.9
Driving and Driving Tests
The Department of Environment’s Driver and Vehicle Agency can make
allowances for customers with disabilities, including those with autism who are
taking the Driving Theory and Practical Driving Tests.
For the Driving Theory Test, a number of adjustments can be made to facilitate
an individual candidate's requirements and these are available at all theory test
centres throughout NI. In some circumstances the delivery of a home test is also
an option. The Agency also facilitates customers in the completion of the
Practical Driving Test. Depending upon the nature of the customer's disability
and subsequent requirements, adjustments can be made to the time allocated
and how instructions, during test, are given.
26
3.0
Strategic Priorities
This section has been developed in consideration of some of the articles in the
UNCRPD and key themes and findings from the pre-consultation exercise. It
defines the Strategic Priorities for the future development and delivery of services
for people with autism under the following themes:
 Awareness;
 Accessibility;
 Children, Young People and Family;
 Independence / Choice and Control;
 Transitions;
 Employment and Employability;
 Access to Justice;
 Being Part of the Community; and
 Participation and Active Citizenship.
3.1
Awareness
Strategic Priority 1
To work in partnership with representatives from all government departments to
access a range of awareness training which will support the public and private
sector in providing services to people with autism, their families and carers.
Strategic Priority 2
Increase awareness and understanding about autism among the general public
with the aim of promoting positive attitudes toward people with autism.
There are many international and national events and symbols which recognise
and celebrate autism, such as World Autism Awareness Day2, Autism Awareness
Month which occurs in April each year in Scotland, Wales and NI and the ‘Light it
up Blue for Autism’ Campaign3. There is, however, a growing need for the
general public in NI to have more awareness about autism, for a variety of
reasons.
2
http://www.un.org/en/events/autismday/index.shtml
3
http://www.lightitupblue.org/Markslist/home.do
27
There needs to be a better understanding of some of the day to day challenges
faced by people with autism, their families and carers. There is a general
acceptance that negative attitudes and perceptions that exist about people with
autism can add to the barriers which they face in their everyday lives. Families
and people with autism report experiencing a sense of isolation and of being
judged.
A parent of a child with autism told us:
“Autism is a hidden disability, our children look 'normal', but they
often behave in a way that is far from appropriate for their age or
appearance. Often the most difficult thing to deal with, as a parent, is
the looks from others when your child 'misbehaves' or has some
'quirky' behaviour that is seen as embarrassing. I have often wanted
to yell MY CHILD HAS AUTISM!"
This Strategy and Action Plan provides an opportunity to advocate and commit to
finding innovative ways to raise awareness about the positive contributions
people with autism make in our society. This is also an opportunity to promote
positive attitudes towards people with autism across all sectors at a community
and regional level in NI and to dispel the myths that exist.
A person with autism said:
“The need to raise awareness amongst people with autism their
families and carers relates to the fact that they need to be better
informed about how best to access their rights and
opportunities.”
As part of its responsibilities for awareness-raising under Article 8 of the
UNCRPD, OFMDFM will include specific references to autism in its campaigns to
raise awareness of the rights and capabilities of people with disabilities and their
contribution to society.
OFMDFM will include autism-specific research as part of its work to identify
issues impacting on people with disabilities.
28
3.2
Accessibility
Strategic Priority 3
Eliminate the barriers that people with autism face in accessing the physical
environment, transport, goods and services so that they can participate fully in all
areas of life.
Strategic Priority 4
Increase the level of accessible / inclusive communications so that people with
autism can access information as independently as possible.
Article 9 of the UNCRPD states that persons with disabilities, which includes
those with autism, should have access, on an equal basis with others, to the
physical environment, to transportation, to information and communications,
including information and communications technologies and systems, and to
other facilities and services open or provided to the public, both in urban and in
rural areas.
Feedback from the pre consultation shows that while people with autism are an
extremely diverse group of individuals they face a variety of challenges in terms
of accessing services. These challenges arise across a wide range of areas
including health and social care, education, employment and learning, housing,
social security benefits and justice.
Stewart, aged 18,
from Derry said:
“My mum has had to fight for every service I
received which should not be the case.
Although I was diagnosed with autism very
early on in my life, I received few services
until the age of 14 which I feel was too late.
It would be better if these services had of
been available to me earlier in life.”
The feedback shows that people with autism want access to the same range of
opportunities as anyone else. However very often they feel that they are not
adequately supported in accessing these services either because of the lack of
awareness about autism among frontline staff or that their specific needs are
likely to be poorly understood due to the lack of skills and experience in working
effectively with people with autism
29
Article 21 of the UNCRPD relates to the right for people to express themselves,
including the freedom to give and receive information and ideas through all forms
of communication, including through accessible formats and technologies, sign
languages, Braille, augmentative and alternative communication, mass media
and all other accessible means of communication.
People with autism can have difficulties with social interaction, social
communication and social imagination, which is referred to as the ‘triad of
impairments’. As previously stated, autism is a spectrum condition which affects
every person in a different way and people will experience different degrees of
difficulty with social interaction and communication. This Strategy and Action
Plan will seek to ensure that the most effective approaches and ways of helping
a person with autism to cope with these difficulties are adopted across a wide
range of services. This will be achieved in a number of ways:

By creating supportive environments and putting in place routine and
supportive strategies for the person with autism by promoting the
importance of visual signage;

Ensuring good communication between service providers and people
with autism to help reduce the possibility of misunderstanding or
confusion through utilisation of new technologies such as voice and
written announcements for transport services; and

Ensuring everyone involved with a person with more complex
communication needs follows the same consistent approach.
3.3
Children, Young People and Family
Strategic Priority 5
Ensure that children and young people with autism and their families have
access to effective and appropriate support, where required, to help them with
the everyday challenges of family life.
Article 7 of the UNCRPD states that, government shall take all necessary
measures to ensure that children with disabilities enjoy the same human rights
and fundamental freedoms on an equal basis with other children.
30
In terms of this Strategy and Action Plan the focus will be on children and young
people with autism and their families having access to services that meet their
needs. Specifically this will include education and health and social care such as
special education provision, respite and short break services.
The aim of the OFMDFM strategy - “Our Children and Young People, Our
Pledge” is to improve the life chances for children and young people to ensure
that every child, irrespective of race, gender, religious belief, age, sexual
orientation, disability, background or circumstances, gets the best start in life and
the support they need to fulfil their potential. The effort to deliver this aim must
include responding to the issues that parents will have to cope with as they bring
up their children.
The DHSSPS strategic policy entitled Families Matter moves parents into a
central position in policy terms and provides strategic direction for government on
how best to assist parents in NI and detailed initiatives and actions to meet those
strategic aims.
These strategies acknowledge that support for families cannot be provided by
government alone. The statutory agencies and the voluntary and community
organisations and most importantly of all parents must work to do the best we
can, to deliver the best possible future for our children and young people with
autism. In the context of this Strategy it is important that families with children
and or young people with autism are able to access services appropriate to meet
their needs
A parent of a child with autism told us:
“There has been some success - for example some of the recommendations
made following an occupational therapy assessment were taken into
consideration by the teacher when planning PE/Games. The success was
short lived - a change of teacher very often brings a completely different
attitude and approach. Inconsistency and changing habits are hard for an
autistic person to cope with.”
31
3.4
Independence / Choice and Control
Strategic Priority 6
Increase the level of choice, control and freedom that people with autism have in
their daily lives.
Article 19 of the UNCRPD relates to independent living and the right to inclusion
and participation in the community.
Feedback from the pre-consultation shows that there is a lack of understanding
in relation to the supported living requirements and housing adaptation needs of
people with autism and their families.
An adult with autism said:
“There is a lack of Information regarding
housing and supported living. We are not
being supported to achieve a degree of
independence.”
DSD Housing Division is developing a new Supporting People Strategy. The
strategy, in development, proposes to assist people with autism by:
3.5

Redesigning services to improve autism care;

Improve performance in autism services;

Improve communication and information for individuals and families;

Contribute to effective engagement and partnership working; and

Train staff and raise awareness.
Transitions
Strategic Priority 7
Transform the process of transitions for people with autism, so that a coordinated approach is adopted in planning and providing for transitional needs,
programs and supports for people with autism across their lifetime
In the past autism was thought of as a childhood condition. This was because
attention has been focused primarily on children and the importance of early
detection and intervention. However there is now widespread recognition that
32
autism is a lifelong condition and the need for support and services changes as
people on the spectrum move through major life phases.
Feedback from the pre-consultation shows that people with autism usually rely
on routines in order to navigate more easily through social situations and that a
sudden change to that routine such as starting a new school, a new job, or
moving from child to adult health services can be very disruptive and unsettling.
A parent from
Fermanagh said:
“Preparation when it is known things will change.
There should be adequate time for person with
ASD to adjust to the changes in routine and
supports (e.g. into adult services, and from
education to training, benefits to work etc.)”
As people with autism move through significant life changes, their quality of life
depends not only upon the foundation that is provided in childhood, but also on
ongoing supports that are specific to the educational, health, social, recreational,
family and employment needs of the individual.
This Strategy and Action Plan anticipates that a co-ordinated approach to
planning and preparing for these transitions can help to reduce the stress and
help support people with autism to manage these difficult phases of their lives
with more confidence and comfort.
3.6
Employment and Employability
Strategic Priority 8
Work towards increasing the number of people with autism entering all levels of
employment and safeguard the rights of those people with autism already in
work.
Strategic Priority 9
Increase the opportunities for people with disabilities to attain skills and
qualifications through access to appropriate training and lifelong learning
opportunities.
Article 27 of the UNCRPD relates directly to work and employment and
recognises the right of persons with disabilities to work, on an equal basis with
33
others. Article 24 of the UNCRPD is in relation to education which includes
access to an inclusive education system at all levels and lifelong learning.
Employment and employability are issues which require a number of government
departments to work together to support people with disabilities to gain and retain
employment. This work must recognise that those who face greater barriers in
accessing work will need more intensive and focussed support.
An adult with autism said:
“I was sacked because I had an uneven profile in work. One day I was
great and the next I wasn’t. But my disability wasn’t taken into
account. There wasn’t support put in place to enable me to create a
more even profile in my role. I needed input to raise my consistency.”
The DEL and its key delivery partners, such as the colleges, universities and
disability organisations, will continue to provide a range of programmes and
services, on a pan-disability basis including people with autism, for those who
wish to obtain and sustain work, move towards employment, or develop
new/existing skills.
3.7 Accessing Justice
Strategic Priority 10
Ensure that people with autism are treated equally by the law, have access to
justice and can live safely in their own community.
Article 12 of the UNCRPD relates to equal recognition before the law. It states
that people with disabilities have the right to recognition as persons before the
law. People with disabilities have legal capacity on an equal basis with others in
all aspects of life. Countries must take appropriate measures to provide support
to people with disabilities so that they can effectively exercise their legal capacity.
In relation to this, work is underway on the development of mental capacity
legislation, with the Mental Capacity (Health, Finance and Welfare) Bill currently
being drafted.
34
Article 13 of the UNCRPD relates to access to justice. It states that people with
disabilities have the right to effective access to justice on an equal basis with
others, including through the provision of appropriate accommodations.
Article 16 of the UNCRPD relates to freedom from exploitation, violence and
abuse. It states that people with disabilities have the right to be protected from
all forms of exploitation, violence and abuse, including their gender based
aspects, within and outside the home.
Feedback from the pre-consultation highlighted a number of key areas for people
with autism when they come into contact with the justice system.
These
included:

The issue of advocacy for witnesses and victims of crime;

Awareness levels for frontline staff in justice organisations; and

Appropriate training for relevant staff in justice organisations.
A parent advised:
“My son can get very agitated when confronted or when surrounded with
people. When stopped by a police check point one evening my son got very
frightened and started talking a lot and repeating himself. The police officer
shone his light into his face my son got very loud and distraught. I had to
explain to the officer why he was acting that way. Something that simple could
have turned into something very bad.”
The DOJ and the criminal justice agencies are committed to ensuring that the
needs of all those who come into contact with the criminal justice system are
identified early on and acted upon appropriately and consistently through all
stages of the justice process.
3.8
Being Part of the Community
Strategic Priority 11
Improve access to sport, arts, leisure and other cultural activities so that people
with autism can be part of the community.
35
Article 30 of the UNCRPD recognises the right of disabled people to take part on
an equal basis with others in cultural life.
An adult with autism
told us:
“We need to know the availability of services,
including volunteering opportunities or
walking clubs etc – it is important for adults
with autism to be given the opportunity to be
socially connected in the local community.”
The Department of Culture, Arts and Leisure (DCAL) have committed to
promoting awareness about autism within the culture, arts and leisure sector with
the aim of enabling people with autism to enhance their quality of life through
their participation in culture, arts and leisure activities.
3.9
Participation and Active Citizenship
Strategic Priority 12
Increase opportunities for people with autism to influence policies and
programmes in Government including the delivery of this Strategy and the
subsequent Action Plan.
Strategic Priority 13
Improve interaction between all sectors to achieve the social inclusion of people
with autism.
The UNCRPD ‘Preamble’ states that persons with a disability should have the
opportunity to be actively involved in decision-making processes about policies
and programmes, including those directly concerning them.
In terms of the development of this Strategy and Action Plan, people with autism
and parents of children with autism, are involved in the development of policy
and decision making through their representative roles on the Autism Strategy
Project Board. This involvement will continue throughout the implementation of
the Action Plan.
36
Under the Health and Social Services (Reform) Northern Ireland Act 2009,
Health and Social Care organisations have a statutory requirement to involve
service users, carers and the public in the planning, commissioning, delivery and
evaluation of services.
37
4.0
Action Plan
The Action Plans which will result from the seven-year lifetime of this Strategy
will provide a framework which sets out the key actions to be taken forward at
strategic level. Departments may develop their own more specific action plans
which they will implement at a departmental / agency level or where appropriate
on a cross departmental basis. Departmental action plans, where they exist, may
provide a useful basis for reporting progress against the strategic level action
plans.
The two-year Action Plan (2013 – 2015) attached to this Strategy seeks to lay the
foundations for building on existing service provision. Many of the actions within
the initial two-year Action Plan are not resource intensive and are intended to
provide a basis for building on existing good practice and multi disciplinary
collaborative work within existing resources.
Laying the Foundations – (2013 – 2015)
1. Access to mainstream services where these are appropriate to meet
individual needs.
2. Access to services which understand and are able to meet the needs of
people with autism.
3. Removal of short-term barriers such as unaddressed diagnoses and
delayed intervention.
4. Access to appropriate pre and post-diagnostic support for families and
individuals (particularly when there is a late diagnosis).
5. Require HSC Trusts to provide data on the prevalence of autism in order
that the Strategy can be updated and implemented.
Future editions of the Action Plan covering the periods 2015 – 2018 and 2018 –
2020 will seek to develop services further to provide more integrated ‘whole life’
and holistic personalised approaches to services.
38
Whole-life journey – (2015 – 2018)
6. Access to integrated service provision across the lifespan to address the
multi-dimensional aspects of autism.
7. Access to appropriate transition planning across the lifespan.
8. Consistent adoption of good practice guidance across education, health
and social areas such as HSC Trusts, Education and Library Boards,
Further and Higher Education, Housing and Arts and Leisure.
9. Capacity and awareness-building in mainstream services to ensure people
are met with recognition and understanding of autism.
Holistic personalised approach – (2018 – 2020)
10. Meaningful partnership across all NI government departments and the
voluntary and community sector.
11. Creative and collaborative use of service budgets to meet individual need
(irrespective of what the entry route to the system is).
12. Access to appropriate assessment of needs throughout life.
13. Access to consistent levels of appropriate support across the lifespan
including into older age.
Over the course of implementation of the initial Action Plan there may be a
requirement to review and revise the Plan to ensure that the actions remain
relevant, focused and measurable. This may result in the development of some
more detailed actions and or revision to others both at strategic and individual
departmental level.
4.1
Implementing the Action Plan
The key aim will be to develop and put in place an infrastructure, at a cross
departmental level, which will help ensure that all stakeholders are able to
39
contribute to the delivery of the Action Plan. It is envisaged that such support will
comprise:
 Technical assistance in analysing and understanding what the
prevalence of autism means in terms of demand for existing and future
services, including mapping services to establish potential gaps in
addressing need;
 Provision of high-quality advice, research and information to NI
government departments and their agencies / arms length bodies so
that they are empowered to make effective decisions regarding the
future planning, commissioning, delivery and monitoring of services;
 Designing, together with local service providers, new service models
which build on collaboration and partnership working across the
sectors;
 Facilitating the sharing of emerging service-based learning and good
practice on a UK and on a wider international basis; and
 Development of accessible communication and training materials,
(including where appropriate web-based material) both for those using
services and for public sector frontline professionals and practitioners,
to improve awareness of autism and facilitate sharing of effective good
practice.
4.2
Autism Strategy Implementation Group
An Autism Strategy Implementation Group will be established to direct, coordinate and manage the implementation of the Strategy and Action Plan on a
cross departmental basis. Although the Group will be led by the DHSSPS each
relevant NI government department will be tasked with implementing, monitoring,
resourcing and reporting progress on their aspects of the implementation of the
Strategy and Action Plan both at an individual departmental / agency level and
also on cross departmental basis.
40
Departments may choose to develop individual action plans to help with
managing, monitoring and reporting progress on implementation as part of the
delivery of their aspects of this strategic Action Plan.
4.3
Duration of the Implementation Group and Terms of Reference
The Implementation Group will continue in existence over the seven year period
of the life of the Strategy (2013 – 2020). An initial Terms of Reference will be
developed, to set out the remit and responsibilities of the Implementation Group
both in terms of review and implementation of the Strategy and Action Plan but
also to commission input from relevant departments regarding the development
of the three-yearly report to be laid before the NI Assembly. The DHSSPS will
review the Group’s Terms of Reference on an annual basis to determine and
effect changes required going forward over the seven year term.
4.4
Monitoring and Reporting
The Autism Act (NI) 2011 stipulates that the Minister for Health, Social Services
and Public Safety will lay a report, prepared by the DHSSPS, before the NI
Assembly within three years of publication of the Strategy. Based on the
timescale for the publication of the Strategy in May 2013 and the Implementation
Group commencing its work in June 2013, an initial report should be laid before
the NI Assembly by June 2016.
A key element of evaluating progress on the implementation and delivery of
actions in the Strategy and Action Plan will be through direct feedback from user
groups. The user groups will be established and organised by the Autism
Strategy Implementation Group in each HSC Trust area to assess progress and
provide feedback from a service user / carer / family perspective.
4.5
Finance and Future Investment
The Strategy and Action Plan recognise the need for greater cooperation across
government departments and agencies in providing services for people with
autism and where possible to make more effective use of available resources. In
this context and in the circumstances of limited additional investment;
departments and their service commissioners may need to consider if shifts in
41
investment are required to deliver the priorities identified in the initial two year
Action Plan (2013 – 2015).
For example the HSCB is currently working to identify additional funding for adult
autism services; however, this does not mean that our vision for improving
services and support for people with autism cannot be achieved without
additional investment. These improvements can still be achieved through more
innovative and efficient use of the considerable existing resources invested in
autism services.
4.6
Structure of the Action Plan
The structure of the Action Plan mirrors the strategic priorities in the Strategy and
is set out in nine sections as follows:
1. Awareness;
2. Accessibility;
3. Children Young People and Family;
4. Independence, Choice and Control;
5. Transitions;
6. Employment and Employability;
7. Accessing Justice;
8. Being Part of the Community; and
9. Participation and Active Citizenship
5.0 Action Plan (2013 – 2015) ‘Laying the Foundations’
42
5.0
Action Plan (2013 – 2015) ‘Laying the Foundations’
Section One – Awareness
Action
Output / Outcome Measure
(1.1) Launch Strategy
and Action Plan
1.1.1. Successful launch event
delivered; attended by people with
autism, their families and carers
and other representatives from
both the public and voluntary
sectors.
(1.2) Train frontline staff
Timescale
DHSSPS to lead
with input from all
Departments
September
2013
1.2.1. Government Departments
frontline staff trained.
March 2014
1.2.2. Government Department’s
Arms Length Bodies relevant
frontline staff trained.
1.3.2. Participation in World Autism
Awareness Day.
User / Carer Defined Outcome
May 2013
1.1.2. Implementation structures
developed and arrangements in
place to monitor progress on
implementation.
1.3.1. Information available on
websites.
(1.3) Develop awareness
campaign.
Responsibility
All Departments
Positive experiences reported by
people with autism and their families
due to increased awareness about
autism.
March 2015
DHSSPS to lead
with input from all
Departments
September
2013
Annually
2013 - 2015
43
5.0
Action Plan (2013 – 2015) ‘Laying the Foundations’
Section One – Awareness
1.3.3. Structures developed and
funding secured to develop a
public autism awareness
campaign.
1.3.4 Public awareness campaign
initiated.
March 2014
DHSSPS to lead
with input from all
Departments
Positive experiences reported by
people with autism and their families
due to increased awareness about
autism.
March 2014
44
5.0
Action Plan (2013 – 2015) ‘Laying the Foundations’
Section Two – Accessibility
Action
Output / Outcome Measure
Responsibility
2.1.1. Improvements in signposting
to services for people with autism.
DHSSPS to
lead with input
from all
Departments
2.1.2. Improvements and access to
a single central source of information
and advice about government
services and support available to
people with autism.
(2.1) Provide information
and advice
DHSSPS to
lead with input
from all
Departments
2.1.3.‘One Stop Shop’ pilot exercise
commissioned and designed in the
Northern HSC Trust area to share
information about health and social
care, housing, education,
employment and benefits.
DHSSPS to
lead with input
from other
stakeholders to
be agreed.
2.1.4. Structures established and
protocols in place for the collection,
recording and reporting of autism
prevalence data by HSC Trusts,
including where possible cooccurring conditions
DHSSPS
Timescale
User / Carer Defined Outcome
March 2014
March 2015
March 2014
Positive experiences reported by
people with autism and their families
due to increased access to relevant
information and advice.
September
2013
45
5.0
Action Plan (2013 – 2015) ‘Laying the Foundations’
Section Two – Accessibility
(2.1) Provide information
and advice
(2.2) Provide services
and support.
2.1.5 Protocols established for
sharing prevalence data across
government departments to aid joint
planning and delivery of services
where appropriate.
2.2.1. Improvements in referral
systems and procedures from
identification to assessment /
diagnosis of autism through to
intervention.
2.2.2. Appropriate education
provision available for people with
autism to meet their needs’.
DHSSPS
DHSSPS, DE,
DEL
DE, DEL
September
2014
Positive experiences reported by
people with autism and their families
due to increased access to relevant
information and advice.
March 2015
2013 -2015
Positive experiences reported by
people with autism and their families
due to removal of barriers to enable
easier access to services.
DHSSPS, HSC
2.2.3 Arrangements in place to
support the delivery for the
implementation of Adult Autism Care
Pathway.
to lead with
input from DE,
March 2015
DEL, DCAL,
DSD
2.2.4 Progress achieved on the
implementation of NICE Clinical
Guidance CG128 and CG142 in NI.
DHSSPS,
HSCB
March 2015
46
5.0
Action Plan (2013 – 2015) ‘Laying the Foundations’
Section Two – Accessibility
(2.2) Provide services
and support.
2.2.5 Barriers are removed for
people with autism in accessing and
using public transport by improving
the provision of travel information
and travel training schemes.
2.2.6 A referral pathway established
between criminal justice agencies
and HSC Trusts to enhance
efficiency and improve access to
services as well as enabling the
identification of client / offender
needs
DRD
2013-2015
Positive experiences reported by
people with autism and their families
due to removal of barriers to enable
easier access to services.
DOJ to lead with
input from
March 2015
DHSSPS
47
5.0
Action Plan (2013 – 2015) ‘Laying the Foundations’
Section Three – Children, Young People and Family
Action
(3.1) Provide joined-up,
timely support
services to meet the
needs of families
with children with
autism.
Output / Outcome Measure
Responsibility
Timescale
3.1.1. Joint working arrangements
in place between HSC Trust
autism services and Education
autism intervention and advisory
services from point of assessment
through to end of post primary
education.
DHSSPS to lead
with input from
DE
September
2013
3.1.2. Support provision for
families and in particular siblings of
children with autism scoped /
scaled.
DHSSPS
User / Carer Defined Outcome
Families experience a seamless
joined up approach support service.
March 2015
48
5.0
Action Plan (2013 – 2015) ‘Laying the Foundations’
Section Four – Independence, Choice and Control
Action
Output / Outcome Measure
Responsibility
(4.1) Provide supported
independent living
options.
4.1.1. Supported housing options
available for people with autism
through DSD’s Supporting People
Programme
DSD to lead with
input from
DHSSPS
Timescale
User / Carer Defined Outcome
Increased number of people with
autism report receiving support to live
independently.
49
5.0
Action Plan (2013 – 2015) ‘Laying the Foundations’
Section Five – Transitions
Action
Output / Outcome Measure
(5.1) Ensure that transition
plans take account
5.1.1 Integrated transition plans
of the needs of
developed for children with autism.
people with autism.
Responsibility
CYPSP Regional
Transitions sub
group
Timescale
User / Carer Defined Outcome
March 2015
Recognisable benefits experienced by
people with autism and their families
when transitioning between services.
50
5.0
Action Plan (2013 – 2015) ‘Laying the Foundations’
Section Six – Employment and Employability
Action
(6.1) Provide support for
people with autism to
access and / or
remain in further and
higher education,
employment and
training.
Output / Outcome Measure
6.1.1 People with autism are
aware of available support to
access and / or remain in:




Further Education
Higher Education
Employment
Training
Responsibility
Timescale
People with autism report accessing
adequate support to enable them to
access / remain in
DEL to lead with
input from DSD,
DHSSPS
User / Carer Defined Outcome
2013 – 2015




Further Education
Higher Education
Employment
Training
51
5.0
Action Plan (2013 – 2015) ‘Laying the Foundations’
Section Seven – Accessing Justice
Action
Output / Outcome Measure
7.1.1. A guide for criminal justice
professionals in Northern Ireland
in place to assist all practitioners
who may come into contact with
someone with autism.
7.1.2. A training model
(appropriate to roles and
functions) developed for Criminal
Justice
(7.1) Provide additional
support for people
with autism in the
justice system.
7.1.3. Improved service for
victims and witnesses
encompassing the needs of
persons with autism delivered
through a new five-year strategy
for victims and witnesses of
crime
Responsibility
Timescale
DOJ
Summer 2013
DOJ
Timescale will
be confirmed
after public
consultation.
DOJ
New strategy
to be in place
by April 2013
and delivered
by March
2018.
7.1.4. “Achieving Best Evidence"
(ABE) guidance for practitioners
revised to include a specific
DOJ
section on interviewing witnesses
with autism.
User / Carer Defined Outcome
Better support available for people
with autism as they go through the
justice system.
Within the
lifespan of the
new Victims
and Witnesses
Strategy (2013
– 2018)
52
5.0
Action Plan (2013 – 2015) ‘Laying the Foundations’
Section Seven – Accessing Justice
7.1.5. Needs assessment tools /
template and screening tool in
place for those who come to the
attention of the criminal justice
system.
DOJ
Timescale will
be confirmed
after public
consultation.
7.1.6 A range of information
available for young people and
their families about the criminal
justice process
DOJ
Timescale will
be confirmed
after public
consultation.
7.1.7 Autism awareness
promoted in criminal justice
organisations through individual
internal and external publications
and other communication tools
(including staff intranets)
DOJ
Annual
publications
7.1.8 Autism Awareness cards
produced for use by justice
practitioners to ensure that
behaviour associated with autism
is identified early and that
individual's needs are addressed
appropriately.
DOJ
March 2014
53
5.0
Action Plan (2013 – 2015) ‘Laying the Foundations’
Section Eight – Being Part of the Community
Action
(8.1) Establish community
social activity
programmes for
people with autism.
Output / Outcome Measure
Responsibility
Timescale
User / Carer Defined Outcome
8.1.1. Self and peer advocacy
support developed for people
with autism and their families to
avail of community and voluntary
sector support.
DHSSPS to
lead with input
from DCAL and
OFMDFM
March 2014
People with autism and their families
are more actively involved in their
communities.
54
5.0
Action Plan (2013 – 2015) ‘Laying the Foundations’
Section Nine - Participation and Active Citizenship
Action
Output / Outcome Measure
Responsibility
Timescale
DHSSPS
December
2011 - May
2013
9.1.2. People with autism,
parents, carers involved in the
implementation of the Autism
Strategy / Action Plan.
DHSSPS
September
2013 - March
2015
9.1.3. People with autism,
parents, carers involved in the
development of the DOJ Victims
and Witnesses Strategy.
DOJ
9.1.1. People with autism,
parents, carers represented on
the Autism Strategy Project
Board.
(9.1) Involve people with
autism in the design,
development and
review of policy
User / Carer Defined Outcome
People with autism have a role in
developing and evaluating policy.
55
Appendix 1
List of Abbreviations
AAIS
Autism Advisory and Intervention Service
ABE
Achieving Best Evidence
AD
Assistant Director
AHP
Allied Health Professional
ASD
Autistic Spectrum Disorder
BHSCT
Belfast Health and Social Care Trust
CAMHS
Child and Adolescent Mental Health Services
CNAP
Celtic Nations Autism Partnership
CYPSP
Children and Young People’s Strategic Partnership
DARD
Department of Agriculture and Rural Development
DCAL
Department of Culture Arts and Leisure
DDA
Disability Discrimination Act
DE
Department of Education
DEL
Department for Employment and Learning
DETI
Department of Enterprise, Trade and Investment
DFP
Department of Finance and Personnel
DHSSPS
Department of Health, Social Services and Public Safety
DOE
Department of the Environment
DOJ
Department of Justice
DRD
Department for Regional Development
DSD
Department for Social Development
ELB
Education and Library Board
EQIA
Equality Impact Assessment
GB
Great Britain
GP
General Practitioner
HOS
Head of Service
HSC
Health and Social Care
HSCB
Health and Social Care Board
HSCT
Health and Social Care Trust
IAD
Information and Analysis Directorate
ICT
Information and Communication Technology
IMTAC
Inclusive Mobility Transport Advisory Committee
56
Appendix 1
List of Abbreviations
JHASG
Joint Housing Adaptations Steering Group
LD
Learning Disability
NEETs
(Young People) Not in Education, Employment or Training
NHSCT
Northern Health and Social Care Trust
NI
Northern Ireland
NICE
National Institute for Clinical Excellence
NICEM
Northern Ireland Council for Ethnic Minorities
NICTS
Northern Ireland Courts and Tribunals Service
NICVA
Northern Ireland Council for Voluntary Action
NIPS
Northern Ireland Prison Service
NISRA
Northern Ireland Statistics and Research Agency
OFMDFM
Office of the First Minister and Deputy First Minister
PBNI
Probation Board for Northern Ireland
PCC
Patient Client Council
PHA
Public Health Agency
RASDN
Regional Autistic Spectrum Disorder Network
POC
Programme of Care
RoI
Republic of Ireland
RQIA
Regulation and Quality Improvement Authority
SEHSCT
South Eastern Health and Social Care Trust
SHSCT
Southern Health and Social Care Trust
SEN
Special Educational Needs
SENDO
Special Educational Needs Disability Order
SLT
Speech and Language Therapy
SSA
Social Security Agency
TfS
Training for Success
UK
United Kingdom
UN
United Nations
UNCRPD
United Nations Convention on the Rights of Persons with
Disabilities
WHSCT
Western Health and Social Care Trust
YJA
Youth Justice Agency
57
Appendix 2
Autism Strategy Project Board
The members of the Project Board are:
Member / Representative
Area
Organisation
Christine Jendoubi
DHSSPS
Alan Hanna
Director of Mental Health and
Disability Policy
Director
Derek Doherty
Assistant Director
Autism Network NI
Dr Arlene Cassidy
Chief Executive
Autism NI
Shirelle Stewart
Co-Director
Monica Wilson
Chief Executive
National Autistic
Society NI (NASNI)
Disability Action
Michelle Bell
DARD
Catherine Fisher
Equality and Better Regulation
Branch
Equality and Better Regulation
Branch
Sports Museums and Recreation
Division
Special Education Policy Advisory
Team
Special Education Policy Advisory
Team
Strategy, Equality and European
Policy
Corporate Services, Information
Management and Equality and
Diversity
Equality and Departmental
Corporate Services Group
Private Office and Equality Team
Jeff Johnston
Private Office and Equality Team
DOE
Brendan Giffen
Central Management
DOJ
Jane Holmes
Central Management
DOJ
Alan Preston
Regional Planning and Transport
Division
Regional Planning and Transport
Division
Communication, Policy and
Strategic Support
DRD
Sharon Fitchie
Colin Watson
Frances Curran
John Leonard
Stephen Jackson
Stephen Wilson
Carolyn Barr
Keith Walsh
Imelda McConnell
Autism Initiatives NI
DARD
DCAL
DE
DE
DEL
DETI
DFP
DOE
DRD
DSD
58
Appendix 2
Autism Strategy Project Board
Margaret Sisk
Corporate Services Unit
DSD
Joe Reynolds
Poverty, Social Inclusion and
Disability
Consultant in Public Health
Medicine / RASDN Chair
Social Care Commissioning Lead
OFMDFM
Dr Stephen Bergin
Eithne Darragh
Bronagh Macauley
Public Health Agency
(PHA)
Health & Social Care
Board (HSCB)
HSCB
Maureen Gilroy
Regional ASD Co-ordinator /
Service Improvement Project
Manager
Service User Representative
Sharon Fennel
Service User Representative
User / Carer
Eleanor McCann
Service User Representative
User / Carer
Leonard Mullin
Service User Representative
User / Carer
Patricia Beaddie
Service User Representative
User / Carer
Dr Ian McMaster
Medical Allied Health Professional
DHSSPS
Peter Deazley
Autism Strategy Core Team
DHSSPS
Bernie Redmond
Autism Strategy Core Team
DHSSPS
Naomhín McGarrity
Autism Strategy Core Team
DHSSPS
User / Carer
59
Appendix 3
Equality Screening Analysis (DHSSPS Initial Draft)
(1). Information about the policy / decision
1.1 Title of the policy / decision
Strategy and Action Plan to help achieve improved services and support for people
with autism, their families and carers throughout their lives.
1.2 Description of policy / decision
What is it trying to achieve:
This Strategy aims to ensure that the services commissioned and provided by NI
government departments for people with autism will have developed in such a way
that they:
 Promote awareness and better understanding of the challenges faced by
people with autism;
 Support people with autism, their families and carers to become well
informed about accessing the services they need;
 Encourage social inclusion of people with autism and work to address
discrimination/stigmatisation; and
 Are tailored to meet the changing needs of people with autism over the
course of their lifetime.
How will this be achieved?
We will achieve this by:
 Increasing awareness and understanding of autism across all sectors;
 Supporting people with autism to better exercise their rights, choices and life
opportunities;
 Supporting the continuing development of an inclusive and effective range of
high quality services for people with autism, their families and carers;

Developing a more integrated approach to the planning, commissioning and
management of services within and across government departments and the
independent, community and voluntary sector.
What are the key constraints (e.g. financial, legislative)
The key constraints are financial although there is also a shortfall/ lack of data and
information in respect of the prevalence of autism in NI.




We are as yet unable to identify additional funding for the Strategy / Action
Plan
There is a lack of resources to build and sustain multi-agency / multi
disciplinary team approaches to providing services
There is a lack of qualitative and quantitative prevalence data / information in
respect of the prevalence of autism in NI
We recognise also that there is a broad range in the type and severity of
needs in terms of people on the autism spectrum and that additionally there
is a lack of information regarding the prevalence of people with autism with
co-existing condition and / or complex needs.
60
Appendix 3
Equality Screening Analysis (DHSSPS Initial Draft)
1.3 Main stakeholders affected
Primarily people with autism, their families and carers but also all professionals
working with children, young people and adults responsible for implementing this
Strategy / Action Plan across a number of NI Government bodies – health and social
care, education, employment and learning, justice and social development.
1.4 Other policies / decisions with a bearing on this policy






A Healthier Future 2005-2025 – DHSSPS;
Bamford Review of Mental Health and Learning Disability – DHSSPS,
Six Steps of Autism Care / A Guide for Families – HSCB / PHA
Learning Disability Service Framework - DHSSPS
DHSSPS Speech and Language Action Plan 2012 –
Adult Autism Care Pathway / Guide / Toolkit (In development) – HSCB / PHA
(2) Screening the policy decision
2.1 In terms of the groupings under Section 75 what is the make up of those
affected by the policy / decision?
Group
Please provide details
There is currently no precise data on the prevalence of autism in NI, but
this Strategy has adopted the UK prevalence rate of around 1 in 100 as the
best estimate of prevalence in children. No prevalence studies have ever
been carried out on adults in the UK or in NI.
Age
The estimated numbers have been worked out from the population of NI as
given in the 2011 census: 1,810,900, of whom 430,080 are under 18.
The figure for children and young people is based on prevalence ratios of
somewhere between, 1 in 88, to 1 in 100. The number of children and
young people under 18 with autism in NI is therefore provisionally
estimated to be between 4,000 - 5,000.
Given that there is no prevalence rate for adults with autism, the figure for
the whole population is a very rough guide, but we estimate that there could
be between 10,000 - 15,000 adults who have autism in NI.
Gender
UK national data suggests that girls with autism are a potentially missed
cohort in terms of acknowledging and getting a diagnosis / assessment of
autism. Evidence suggests that a significant number of girls never come to
the attention of services because they are better able than boys to deploy
strategies or develop learned behaviours to overcome difficulties with
communication and social interaction.
Religion
No data available which suggests any obvious difference between groups
of different religion.
Political
No data available which suggests any obvious difference between groups
61
Appendix 3
Equality Screening Analysis (DHSSPS Initial Draft)
Opinion
of different political opinion.
Marital
Status
No data available which suggests any obvious difference between groups
of different marital status.
Dependant
Status
Although there is no data in terms of the Dependant status of people with
autism, the Strategy / Action Plan may have a bigger impact on families /
parents who have one or more children with autism.
Disability
In terms of the prevalence of disability as a whole in NI, NISRA statistics
(2007) show that the prevalence of disability amongst adults varies
significantly with age, ranging from a low of 5% amongst young adults aged
16-25 to 60% amongst those aged 75 and above.
Although there is a general recognition that disability increases with age,
autism is a lifelong condition and is a broad spectrum condition for which
people will needs varying levels of services and support for throughout their
lives.
This assessment acknowledges that there is no hierarchy of disabilities and
that people with autism have the same rights as others with regard to
access to services, social inclusion and equality of opportunity. This
strategy therefore seeks to promote equality of opportunity for all people
with disabilities, including those with autism recognising that some services
may continue to be provided via mainstream services or on a pan-disability
basis to people with autism.
There are no current valid estimates of the proportion of people with autism
who have a co-existing condition / disability – for example a learning
disability. It is, in fact, reported that it is likely that over 50% of people with
autism have an IQ in the average to high range and may never come to the
attention of services due to the fact that they are able intellectually.
Despite the fact that we know that autism is not a mental health condition, a
2011 UK study showed that as many as 70% of children with autism have
mental health problems such as anxiety, depression, and obsessive
compulsive disorders (OCD) and 40% have two or more.
Very often this can mean that children and young people only engage with
services when their health has deteriorated, to a point of requiring acute
interventions. Currently in NI it is felt that there is a significant competency
gap amongst staff in CAMHS and adult mental health services in relation to
providing appropriate and effective psychiatric support to people with
autism.
Ethnicity
No data available which suggests any obvious difference between groups
of different ethnicity.
Sexual
Orientation
No data available which suggests any obvious difference between groups
of different sexual orientation but people from the lesbian, gay bi-sexual or
trans-sexual community, who have autism, may experience confusion
about their sexual identity.
62
Appendix 3
Equality Screening Analysis (DHSSPS Initial Draft)
2.2 Is there any indication or evidence of higher or lower participation or
uptake by different groups?
Group
Yes/No/
Don’t
Know
Please provide details
Age
Yes
There is evidence to suggest that disability, in general,
increases with age. As previously indicated autism is a
lifelong condition but there is also evidence to suggest
that without access to appropriate timely services and
support throughout their lives some people with autism
can go on to develop mental health problems.
Gender
Yes
As above there is a suggestion that a significant number
of girls with autism do not pursue a diagnosis or
assessment of their condition. It is believed that girls are
better able to develop coping strategies to overcome
challenges with communication and or social interaction.
Discussions are ongoing regarding the range of data that
the HSC Trusts will record and relate in terms of the
prevalence of autism i.e. age, gender and or –co existing
condition.
Religion
No
Political
Opinion
No
Marital
Status
No
Disabled people including people with autism who live
alone are more likely to suffer social exclusion.
Dependant
Status
Yes
Parents of children with autism very often feel excluded
from community and other services particularly in
circumstance where their child / children present with
complex sensory difficulties or other challenging
behaviours.
Disability
Yes
People with autism are an extremely diverse group, who
face a variety of challenges in terms of accessing
services including:

Difficulties relating to other people, and to the ‘social
world’ in general;

High levels of social exclusion – due to low rates of
employment and the fact that many live with parents
well into adulthood;

Higher probability / incidence rates of developing
psychiatric / mental health conditions;
63
Appendix 3
Equality Screening Analysis (DHSSPS Initial Draft)

Ethnicity
No
Sexual
Orientation
No
Often feel that they are not adequately supported in
accessing mainstream services.
2.3 Is there any indication or evidence that different groups have different
needs, experiences, issues and priorities in relation to the policy /
decision?
Group
Yes/No/
Don’t
Know
Age
Yes
Gender
No
Religion
No
Political
Opinion
No
Marital
Status
No
Dependant
Status
Yes
Please provide details
The challenges faced by people with autism change and
can increase as they get older – particularly at key
transition stages of their lives – for example from child to
adult services and from adult to older people’s services.
Also, many disabilities increase (deteriorate) with age and
some people with autism can go on to develop mental
health problems.
People with autism face greater difficulties in forming
relationships and those who live alone experience more
social isolation / become more socially isolated over time.
Parents / families with one or more children with autism
may have other children / Dependants. This can cause
additional stresses and challenges for families and make it
more difficult for parents to devote time to all their children
because of the more intensive demands of caring for their
child/children with autism.
Part of the pre-consultation feedback for this Strategy /
Action Plan shows that siblings of children and young
people with autism also experience stress because of this
and also feel that their parents have limited / minimal time
to devote to them because of their caring responsibilities
for the sibling with autism.
64
Appendix 3
Equality Screening Analysis (DHSSPS Initial Draft)
Disability
Yes
Ethnicity
No
Sexual
Orientation
No
As stated above people with autism are a diverse group,
who face a variety of challenges in terms of accessing
services.
2.4 Is it likely that the policy / decision will meet those needs?
Group
Yes/No/
Don’t
Know
Please briefly give details
Yes
The Strategy and Action Plan promote equality of access to
services for people with autism, regardless of age. They
also include recommendations and actions around
“transitions” to make these changes as seamless as
possible for people with autism.
Gender
Yes
The aim of the strategy is to improve outcomes and support
for those people with autism their families and carers
throughout their lives and includes an action plan with timebounded actions for achieving these improvements
Marital
Status
Yes
The strategy aims to improve access to services for all
people with autism.
Yes
The aim of the strategy is to improve outcomes and support
for those people with autism their families and carers
throughout their lives and includes an action plan with timebounded actions for achieving these improvements
Yes
The aim of the strategy is to improve outcomes and support
for those people with autism their families and carers
throughout their lives and includes an action plan with timebounded actions for achieving these improvements
Age
Dependant
Status
Disability
Sexual
Orientation
Don’t
Know
Ethnicity
Don’t
The strategy does not specifically address the needs of
either the heterosexual, lesbian, gay, bi-sexual or transsexual communities in terms of people with autism.
It does however promote equality of access to services for
all people with autism and in line with this seeks to support
good physical, mental and sexual health for people with
autism
The strategy does not address the needs of any specific
racial group / ethnicity of people with autism. There is no
65
Appendix 3
Equality Screening Analysis (DHSSPS Initial Draft)
available data to provide a breakdown of white, black and
minority ethnic groups of people with autism in NI.
Know
Overall the Strategy / Action Plan should lead to improved
quality, consistency and responsiveness of services to meet
the needs of people with autism.
Overall
Summary
2.5 Is there an opportunity to better promote equality of opportunity or good
relations by altering the policy / decision or working with others in government
or in the larger community?
Group
Suggestions
All
No
2.6 What changes to the policy / decision – if any – or what additional
measures are suggested to ensure that it promotes good / relations?
Group
Suggestions
Religion
None
Political Opinion
None
Ethnicity
None
2.7 Have previous consultations with relevant groups, organisations or
individuals indicated that particular policies create problems that are specific to
them? Also please detail information used to answer any of the questions above (e.g.
statistics; research reports; views of colleagues; service users or other stakeholders)
A comprehensive pre-consultation exercise was undertaken with a range of people with
autism and their families and carers, including children and young people, on the
content of this Strategy. Among the wide ranges of points highlighted were:
From a health and social care perspective:

People with autism experience difficulty in accessing services such as
occupational therapy services Child and Adolescent Mental Health Services
(CAMHS) and adult autism services;

There is a lack of joined up services and appropriate respite for children,
young people and families; and

Improved planning is required at key transitions stages for people with autism.
From an education perspective:

Autism awareness training is required for staff in schools including teachers,
classroom assistants and playground staff;

Early access to statutory ‘statementing’ and assessment process for children
66
Appendix 3
Equality Screening Analysis (DHSSPS Initial Draft)
and young people with autism; and

Multi-disciplinary services such as occupational and speech and language
therapists and CAMHS should be available in schools/colleges.
From an employment and learning perspective:

Access to employment support specific to people with autism;

Autism awareness raising among employers and further and higher education
providers; and

More opportunities for work placements and training for people with autism.
From a social housing perspective

Better understanding of the housing needs of people with autism; and

Improved access to housing adaptations for people with autism.
From a social security benefits perspective

People with autism feel that they do not understand or find it easy to access
their entitlement to social security benefits – form filling etc; and

Concerns about the impact the current Welfare Reform Bill might have on their
entitlement to Disability Living Allowance (DLA).
From a justice perspective

The need for advocacy services for witnesses and victims of crime

The need for frontline staff in justice organisations to be autism aware; and

Bespoke autism training for frontline staff in justice organisations.
2.8 Please detail what data you will collect in the future in order to monitor the
effect of the policy / decision on any of the groups under Section 75?
The Action Plan includes an action relating to the research and data required to assist
with the planning and commissioning of services in the future for people with autism.
HSC Trusts will collect and record data on the prevalence of autism in NI including
details of age, gender and co occurring conditions for people with autism. HSC Trusts
will also record details on the number of referrals and the number of actual diagnosis.
All relevant NI Government Departments will implement and report progress on the part
of the Action Plan relevant to them and each Department will also take action to
mitigate any evolving equality issues which emerge over time as data is collated.
67
Appendix 3
Equality Screening Analysis (DHSSPS Initial Draft)
(3) Should the policy/decision be subject to equality impact assessment?
Equality impact assessment procedures are confined to those policies/decisions
considered likely to have significant/major implications for equality of opportunity.
If your screening has indicated that a policy/decision is likely to have an adverse
differential impact, how would you categorise it? Please tick.
Significant/major impact

Low impact
Do you consider that this policy/decision needs to be subjected to a full equality
impact assessment?
Yes
No

Please give reasons for your decision.
Currently there is insufficient data and or information available in relation to the
prevalence of autism for people in NI to properly indicate any differential impact in
terms of the policies and actions proposed in this Strategy / Action Plan.
The delivery of the policies and programmes and any equality implications arising
from specific Departmental actions will be the responsibility of the relevant
Department/s.
(4) Disability Discrimination
4.1 Does the policy/decision in any way discourage disabled people from
participating in public life or does it fail to promote positive attitudes towards
disabled people?
No. The strategy aims to improve outcomes for people with autism, their families
and carers throughout their lives including improved social inclusion and
participation in society.
4.2 Is there an opportunity to better promote positive attitudes towards
disabled people or encourage their participation in public life by making
changes to the policy/decision or introducing additional measures?
The launch of the strategy itself will raise the profile of autism. Also specific
actions are included about developing an autism awareness campaign which will
raise the profile of autism and help promote positive attitudes toward people with
autism within the general public.
68
Appendix 3
Equality Screening Analysis (DHSSPS Initial Draft)
4.3 Please detail what data you will collect in the future in order to monitor the
effect of the policy/decision with reference to the disability duties?
The Action Plan includes an action relating to the research and data required to
assist with the planning and commissioning of services in the future for people
with autism.
HSC Trusts will collect and record data on the prevalence of autism in NI
including details of age, gender and co occurring conditions for people with
autism HSC Trusts will also record details on the number of referrals and the
number of actual diagnosis
All relevant NI Government Departments will implement and report progress on
the part of the Action Plan relevant to them and each Department will also take
action to mitigate any evolving equality issues which emerge over time as data is
collated.
Following the publication of the Strategy / Action Plan a system for review and
evaluation of the implementation will be put in place. The implementation of the
Strategy and Action Plan will be the responsibility of all relevant NI Government
Departments.
In line with the requirements of the Autism Act (NI) 2011 monitoring reports will
be provided to the NI Executive to ensure that the Strategy’s recommendations
and Action Plan is implemented. This process will measure progress in terms of
planned service developments and evaluate the extent to which services are
leading to better outcomes for people with autism.
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Appendix 3
Equality Screening Analysis (DHSSPS Initial Draft)
(5)
Consideration of Human Rights
5.1 Does the policy/decision affect anyone’s Human Rights?
Article
Positive
Impact
Negative
Impact
Neutral
Impact
(Human right interfered with or
restricted)
Article 2 – Right to life
Article 3 – Right to freedom from torture,
inhuman or degrading treatment or
punishment


Article 4 – Right to freedom from slavery,
servitude and forced or compulsory labour

Article 5 – Right to liberty and security of
person

Article 6 – Right to a fair and public trial within
a reasonable time

Article 7 – Right to freedom from
retrospective criminal law and no punishment
without law.

Article 8 – Right to respect for private and
family life, home and correspondence.

Article 9 – Right to freedom of thought,
conscience and religion

Article 10 – Right to freedom of expression

Article 11 – Right to freedom of assembly and
association

Article 12 – Right to marry and found a family

Article 14 – Prohibition of discrimination in the
enjoyment of the convention rights

1st protocol Article 1 – Right to a peaceful
enjoyment of possessions and protection of
property

1st protocol Article 2 – Right of access to
education

70
Appendix 3
Equality Screening Analysis (DHSSPS Initial Draft)
5.2 If you have identified a likely negative impact who is affected and how?
None. The strategy and action plan aim to improve outcomes and support for all people with
autism in NI
5.3 Outline any actions which could be taken to promote or raise awareness of
human rights or to ensure compliance with the legislation in relation to the
policy/decision.
None. The strategy and action plan aim to improve outcomes and support for all people
with autism in NI.
71
Appendix 4
References
Legislation
United Nations Convention on the Rights of the Child 1989 www.unicef.org/crc/files/Rights_overview.pdf
- Summary
The Disability Discrimination Act 1995
www.legislation.gov.uk/ukpga/1995/50/contents
The Children (NI) Order 1995
www.legislation.gov.uk/nisi/1995/755/contents
The Children’s Services Planning Order 1998
www.legislation.gov.uk/nisr/1998/261/contents/made
The Human Rights Act 1998
www.legislation.gov.uk/ukpga/1998/42/contents
The Northern Ireland Act 1998
www.legislation.gov.uk/ukpga/1998/47/contents
Special Educational Needs and Disability (NI) Order 2005
http://www.legislation.gov.uk/nisi/2005/1117/contents/made
The Disability Discrimination Order 2006 / Disability
www.legislation.gov.uk/nisi/2006/312/pdfs/uksi_20060312_en.pdf
Discrimination (NI) Order 2006
United Nations Convention on the Rights of Persons with
www.un.org/disabilities/default.asp?id=150
Disabilities 2008
Autism Act (NI) 2011
www.legislation.gov.uk/nia/2011/27/pdfs/nia_20110027_en.pdf
Other Documentation
DHSSPS
Independent Review of Autism Services – May 2008
www.dhsspsni.gov.uk/independent_review_of_autism_services_final_report.pdf
72
Appendix 4
References
Families Matter: Supporting Families in NI – Regional
Family and Parenting Strategy – March 2009
http://www.nidirect.gov.uk/families_matter_strategy.pdf
ASD Strategy and Action Plan June 2009
www.dhsspsni.gov.uk/asd_strategic_action_plan.pdf
Transforming Your Care – A Review of Health and Social
Care in NI – December 2011
www.dhsspsni.gov.uk/transforming-your-care-review-of-hsc-ni-final-report.pdf
Six Steps of Autism Care / A Guide for Families – October
2011
www.belfasttrust.hscni.net/pdf/Six_Steps_of_Autism_Care_Pathway_Report.pdf
Speech and Language Therapy Action Plan 2011/12 –
2012/13
www.dhsspsni.gov.uk/speech__language_and_communication_therapy_action_pl
an_-_march_2011.pdf
Adult Autism Care Pathway / Guide / Toolkit – June 2012
www.hscboard.hscni.net/asdnetwork/Publications/Autistic%20Spectrum%20Disord
er%20-%20Adult%20Care%20Pathway%20-%20July%202012%20%20PDF%201MB.pdf
Families Matter: Supporting Families in NI – Regional
Family and Parenting Strategy – March 2009
http://www.nidirect.gov.uk/families_matter_strategy.pdf
Bamford Review of Mental Health and Learning Disability
– Current Action Plan 2012 – 2015
www.dhsspsni.gov.uk/bamford_action_plan_2009-2011.pdf
Fit and Well – Changing Lives – A Ten Year Public Health
Strategic Framework for Northern Ireland 2012-2022
www.dhsspsni.gov.uk/showconsultations?txtid=57771
Developing Advocacy Services - A Policy Guide for
Commissioners - May 2012
www.dhsspsni.gov.uk/Developing-Advocacy-Services-A-guide-for-CommissionersMay-2012.pdf
Learning Disability Service Framework September 2012
www.dhsspsni.gov.uk/learning_disability_service_framework.pdf
73
Appendix 4
References
National Institute for Health and Clinical Excellence Guidance
National Institute for Health and Clinical Excellence
www.nice.org.uk
Autism in Children and Young People
www.nice.org.uk/CG128
Autism in Adults
www.nice.org.uk/CG142
DE
Special Educational Needs (SEN)
www.deni.gov.uk/index/support-and-development2/special_educational_needs_pg.htm
A Guide for Parents
www.deni.gov.uk/index/support-and-development2/special_educational_needs_pg/7-special_needs-a_guide_for_parents_pg.htm
SEN Code of Practice
www.deni.gov.uk/index/support-and-development2/special_educational_needs_pg/special_needs-code_of_practice_pg.htm
Recording Children with SEN
www.deni.gov.uk/index/support-and-development2/special_educational_needs_pg/7recording_children_with_special_eduational_needs.htm
Reports and Publications
www.deni.gov.uk/index/support-and-development2/special_educational_needs_pg/special_educational_needs-newpage-2.htm
74
Appendix 4
References
Resource to Support Children with SEN
www.deni.gov.uk/index/support-and-development2/special_educational_needs_pg/support-children-with-sen.htm
Review of SEN and Inclusion
www.deni.gov.uk/index/support-and-development2/special_educational_needs_pg/review_of_special_educational_needs_and_inclu
sion.htm
SEN Legislation
www.deni.gov.uk/index/support-and-development2/special_educational_needs_pg/special_needs-legislation_pg.htm
Supporting Pupils with Medication Needs
www.deni.gov.uk/index/support-and-development2/special_educational_needs_pg/special_educational_needssupporting_pupils_with_medication_needs-2.htm
Education Support for NI – Special Education
www.education-support.org.uk/parents/special-education
Report of the Task Group on Autism – April 2002
www.deni.gov.uk/index/facts-and-figures-new/departmentalpublications/special_educational_needs_-_reports_and_publications-newpage2/special_educational_needs_-_reports_and_publications-newpage-4.htm
Autistic Spectrum Disorders – A Guide to Classroom
Practice
www.deni.gov.uk/asd_classroom_practice.pdf
Education and Library Boards’ Good Practice Guidelines
– SEN
www.selb.org/specialeducation/Documents/GoodPracticeGuidelines.pdf
75
Appendix 4
References
Education and Library Boards’ Provisional Criteria for
Statutory SEN Assessments
http://80.4.159.11/special-needs/PDFs/Provisional_Criteria2.pdf
Middletown Centre for Autism
www.middletownautism.com
Report of an Inspection of Middletown Centre for Autism –
September 2012
www.etini.gov.uk/index/inspection-reports/inspection-reports-specialeducation/inspection-reports-special-2012/joint-inspection-middletown-centre-forautism.pdf
Every School a Good School – A Policy for School
Improvement – April 2009
www.deni.gov.uk/esags_policy_for_school_improvement_-_final_version_05-052009.pdf
Count Read: Succeed – A Strategy to Improve Outcomes
in Literacy and Numeracy – March 2011
www.deni.gov.uk/count_read_succeed_a_strategy_to_improve_outcomes_in_liter
acy_and_numeracy.pdf
DEL
Skills Strategy
www.delni.gov.uk/success-through-skills-transforming-futures.pdf
Essential Skills Strategy
www.delni.gov.uk/es/essential_skills_for_living-2.pdf
Employment Service Strategy (in development)
Higher Education Strategy - Access to Success
www.delni.gov.uk/access-to-success.pdf
Success through Science Technology Engineering
Mathematics
www.delni.gov.uk/2857p_stem_booklet_v5.pdf
76
Appendix 4
References
Pathway to Success Strategy
www.delni.gov.uk/del-pathways-to-success-v6.pdf
FE Means Business
www.delni.gov.uk/es/fe_means_business_implementation_plan_-_june_06.pdf
Preparing for Success – (joint DE/DEL Careers strategy)
www.delni.gov.uk/es/ceiag_pfs.pdf
DETI
Northern Ireland Economic Strategy
www.northernireland.gov.uk/economic-strategy
DOJ
Community Safety Strategy
http://www.dojni.gov.uk/index/publications/publication-categories/pubs-policingcommunity-safety/community-safety-strategy-2012-2017.htm
DRD
Accessible Transport Strategy Action Plan
http://www.drdni.gov.uk/accessible_transport_strategy_for_northern_ireland_201510.pdf
Accessible Transport Strategy Action Plan
www.drdni.gov.uk/index/sustainable_transport_branch/the-accessible-transportstrategy-draft-action-plan-2012-2015.htm
Travel Safe Guide
www.drdni.gov.uk/index/sustainable_transport_branch/travel-safe-a-guide-aboutcommunity-safety-for-people-with-learning-disabilities.htm
77
Appendix 4
References
DSD
General Information on Social Security benefits
www.nidirect.gov.uk
General Information on Social Security benefits
www.dsdni.gov.uk
OFMDFM
Our Children and Young People – Our Pledge – A Ten
Year Strategy for Children and Young People in NI 2006 – http://www.delni.gov.uk/ten-year-strategy_1_.pdf
2016
A Strategy to improve the lives of disabled people – 2012- http://www.ofmdfmni.gov.uk/index/equality/disability/consultation-draft-disability2015
strategy.htm
NI Government Departments Websites
Department of Agriculture and Rural Development
www.dardni.gov.uk
Department of Culture, Arts and Leisure
www.dcalni.gov.uk
Department of Education
www.deni.gov.uk
Department for Employment and Learning
www.delni.gov.uk
Department of Enterprise, Trade and Investment
www.detini.gov.uk
78
Appendix 4
References
Department of Finance and Personnel
www.dfpni.gov.uk
Department of Health, Social Services and Public Safety
www.dhsspsni.gov.uk
Department of the Environment
www.doeni.gov.uk
Department of Justice
www.dojni.gov.uk
Department for Regional Development
www.drdni.gov.uk
Department for Social Development
www.dsdni.gov.uk
Office of the First and Deputy First Minister
www.ofmdfmni.gov.uk
The official government website for NI citizens
NI Direct
www.nidirect.gov.uk
Health and Social Care Organisations
Health and Social Care Board
www.hscboard.hscni.net
Public Health Agency
www.publichealth.hscni.net
Patient and Client Council
www.patientclientcouncil.hscni.net
Belfast Health and Social care Trusts
www.belfasttrust.hscni.net
Northern Health and Social care Trusts
www.northerntrust.hscni.net
79
Appendix 4
References
South Eastern Health and Social care Trusts
www.setrust.hscni.net
Southern Health and Social care Trusts
www.southerntrust.hscni.net
Western Health and Social care Trusts
www.westerntrust.hscni.net
Education and Library Boards
Belfast
www.belb.org.uk
North Eastern
www.neelb.org.uk
South Eastern
www.seelb.org.uk
Southern
www.selb.org.uk
Western
www.welbni.org
Financial Support / Benefits
Social Security Agency
www.dsdni.gov.uk/index/ssa.htm
HM Revenue and Customs Tax Credits
http://www.hmrc.gov.uk/TAXCREDITS
NI Housing Executive Housing Benefit
http://www.nihe.gov.uk/index/benefits/housingbenefit.htm
80
Appendix 4
References
Further Education Colleges
Belfast Metropolitan College
http://www.belfastmet.ac.uk/StudentServices/DisabilityServices/Default.aspx
North West Regional College
www.nwrc.ac.uk
Northern Regional College
www.nrc.ac.uk
Southern Regional College
www.src.ac.uk
South Western Regional College
www.swc.ac.uk
Southern Eastern Regional College
www.serc.ac.uk
Higher Education / Universities
Queens University – Disability Services
www.qub.ac.uk/directorates/sgc/disability
University of Ulster – Student Support
http://www.studentsupport.ulster.ac.uk/disability/disability.html
Community / Voluntary Organisations
Autism Initiatives NI
www.ai-ni.co.uk
Autism NI
www.autismni.org
Autism Network NI
www.autismnetworkni.org.uk
Barnardo’s
www.barnardos.org.uk
81
Appendix 4
References
Disability Action
www.disabilityaction.org
Eagle
www.belfastcentralmission.org
Mencap
www.mencap.org.uk
Parent’s Education as Autism Therapists (PEAT)
www.peatni.org
The National Autistic Society (NAS) NI
www.autism.org.uk
82